I recently read Surviving and Thriving With Invisible Chronic Invisible Illness by Ilana Jacqueline. It's a great (and easy) read, and I really recommend it to anyone with chronic illness, or anyone in a supporting role, or just wanting to understand and find empathy for us. I have many takeaways, and they will find their way into many posts, I'm sure, but one that struck me was how often she mentioned clothes, of all things! My gut reaction was, jeez, I have so many other things to be worrying about, clothes are the last thing I'm worried about these days.
But that's just it -- I have given up on actually wearing clothes I like because my other needs come first. This may seem so trivial, but clothes are such a symbol of our identities and self-expression. Our clothing choices reflect how we feel and who we want to be. They are a way of communicating who we are and are a piece of our identities that we can actually control.
I was never super trendy; my family didn't prioritize spending money on clothes, so much of my wardrobe consisted of hand-me-downs from sisters, cousins, etc. None of it fit me particularly well (I'm the runt of the family -- probably thanks to malnutrition) and certainly wasn't what I would have picked out. I did have a style I liked, though, and in middle school I became interested in fashion design, even filled sketch pads with ideas. I even went as far as designing and sewing my own semi-formal dress in eighth grade.
I started buying more clothes in college during my belated adolescent rebellion phase when I was trying out all the things I never did at home, like eating cotton candy every chance I got. My style started to develop a bit more, but I was still pretty frugal, so it wasn't quite what I'd dreamed of.
I couldn't quite keep myself comfortable though. One friend/hallmate freshman year of college asked why I seemed to go through several outfits every day. The truth? I couldn't find an outfit that fit all of my mast cells' swings. What could I put on in the morning that would comfort me through intense chills, hot flashes, sudden drenching sweats, full-body itching and skin sensitivity (to rough fabrics, lace, etc), aches/pains... added to all of this was back pain that was exacerbated by bras and hip pain by tight paints. I also couldn't wear most shoes without foot, ankle, and knee pain, so any hope of wearing something cute on my feet was a joke. I also had nerve issues in my thoracic outlet (armpits), so wearing layers that bunched or shirts with tight sleeves could cause pain, numbness, and/or tingling in my hands.
It's a weird kind of cognitive dissonance, to picture yourself in the style that expresses who you are and then look in the mirror and find someone that not only do you not find attractive, but who also doesn't look like "you."
As an adult (I guess??), I'm still faced with the above challenges. Added to that is the recent weight gain from no longer losing my meals before they've been absorbed. I can't fit into any of my cute clothes. I spent almost a year refusing to buy bigger clothes for the same reason that too many women buy "aspiration jeans" -- I didn't want to settle for being bigger. I wanted my lack of clothes to be motivation to lose weight. But I'm not even supposed to lose weight, and I felt bad about myself every time I tried to squeeze my jiggly thighs into an old pair of skinny jeans... so I finally caved and bought new professional clothes that are made for my body type. As it is now.
This is something that the book stressed multiple times -- you should buy clothes for each size/shape your body goes through. Medications, diets, flares -- they can all make your weight fluctuate. You don't want your lack of fitting clothes to add additional stress to an already uncomfortable change in your body. Each time you fluctuate one way or the other, you should have clothes that make you feel attractive, and professional, so that you still feel like you, no matter the size.
So here I am. Regardless of my personal style, my reality dictates a specific outfit:
very specific (and not cute) bras due to spine/shoulder pain and difficulty breathing; or no bra at all
loose, comfortable, cotton underwear or boxers for a whole slew of complications
baggy t-shirts because anything tight looks terrible over my ugly bras
layers like flannels and fleeces so that I can easily go from freezing to boiling without too much effort
loose-fitting pants that don't hurt my SIJ, hips, or knees
big clunky shoes with good heel cups
sun screen or sun hat or both so I don't react too much to the sun
alternating between thin socks when my feet swell (and therfore sweat) and thick woolly socks for when my circulation sucks and my toes turn white and numb, and compression socks or stockings when I'm particularly POTSy
And that's when I'm out in public. At home, I rarely wear bras (not worth the pain) and wear pretty much exclusively sweatpants in the winter (the difference in pain levels is unreal) and loose shorts or dresses in the summer. I also spend much of my home time in the summer repeatedly spraying myself with a spray bottle and wearing ice packs strapped onto my face and body to keep from overheating myself into a bad MCAS reaction.
\It can be really frustrating to not be able to look the way I want. I sometimes feel self-conscious around people, wanting to explain that this isn't really who I am. But I find days when wearing cute, fitted clothes won't bother my body too much, and boy does it feel good! I never appreciated a good pair of shorts or a sun dress quite this much. And it is quite liberating to have gotten to a place where I'm confident in what I need, and can be incredibly comfy whenever I want